Late to the Party: My Adult Diagnosis of Autism
My name is Steve Condrey, and I am a proud member of the autism spectrum. To open, I’ll tell you a little about myself:
I am 48 years old, and I was diagnosed in 2008 shortly after adopting my first child. I have been married for 13 years now, to a wonderful woman who has learned along with me how to deal with my diagnosis and explain it to her family, just as I have to mine. It is the first marriage for both of us. I have two children, an 11-year-old boy and a 6-year-old girl, both adopted. I have three dogs and a cat. I am a proud graduate of UC San Diego holding a degree in history with minors in chemistry and mathematics. I am currently finishing my Masters degree in data science and analytics at Bellevue University in Nebraska. I have been a federal government employee for the past 23 years, having not been accepted by the military but wanting to serve my country anyway, just like my father. I currently work as a quality manager for a major government agency which impacts the daily lives of every American citizen, but to avoid running afoul of ethics rules, I will not disclose which one it is here. My opinions are not necessarily those of my employer.
I enjoy amateur astronomy, chess, and science fiction conventions in my spare time. I own just about everything ever written or filmed in connection to the television series “Babylon 5,” and I am proud of it! I wear my nerd badge proudly. It wasn’t always that way, but it is now. But I am also into distance running and weightlifting, and until I was stopped by an eye injury I practiced martial arts regularly. I am at home both at the opera and at a hockey game, although I may need earplugs if either one gets too loud for me. I have no problem sitting down to watch reality TV with my wife or silly YouTube videos with my kids, although I might feel the need to move on to something else later only because I need to feed my own needs. I am by education and inclination a scientist and engineer, but I am also a Christian and I attend church regularly. I would like to volunteer more, but time does not permit it. In other words, at the end of the day I am not much different from anyone else you know. At least on the outside.
It hasn’t always been this way. For as long as I can remember I have been the odd man out, struggling to understand why people did the things they did. My parents certainly noticed I wasn’t like other kids, not even my two older brothers. We often ran into some rather nasty conflicts, mostly centered on why things were the way they were when my parents simply wanted me to accept parental authority and move on. I questioned too much, too hard, and very frequently at problematic times.
But my parents had my best interests in mind. They were the advocates I needed, even though the perception and the clinical definition of autism was different during my childhood in the 1970s and 1980s. I had no doubt my mother and father would have fought to the very grave itself for me. Despite operating in the dark themselves, they did a fantastic job. Not perfect — as a parent now myself I know how elusive that goal is — but definitely better than most parents I saw growing up, or even today.
I had quite a few health problems in early childhood, some severe enough to put my life in jeopardy on several occasions up to the age of 14. My mother always felt at fault for them. “I didn’t put you together right,” she would tell me, often with tears in her eyes. When I was first diagnosed on the spectrum in 2008, she tried to take responsibility for that as well. My mother, who along with my father has passed to her Final Reward in the past couple of years, was raised as a strict Baptist. I’ll talk about my intersection with the community of faith later on, but I found it helpful to tell her the story of Jesus with the blind man:
“As he went along, he saw a man blind from birth. His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’
“’Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of Him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world.’” — John 9:1-3 (NIV)
To me this is an important message for parents regardless of their faith — most conditions are purely the result of the child’s DNA being coded a little differently than expected. And whether we are Christian or not, we have the ability to bring light into the world with our response. This is why I am writing my story. I write for my mother and father, and for every parent who may be wondering, “Why me?”
There have been a lot of controversial “cures” for autism in recent years, along with what I consider the asinine trend of avoiding childhood vaccinations to prevent children from becoming autistic. Childhood vaccinations, along with sanitation, have been the greatest public health revolution of the past century or so. The past two or three generations in the industrialized world have had little to no contact with diseases like measles, mumps, and rubella that once permanently damaged or killed thousands of children every year. Even assuming a 1 percent likelihood of autism from a vaccine, that’s still an acceptable risk compared to what used to happen to children every year. I won’t get into the even more extreme cures such as bleach enemas and any manner of snake oil promoted on the Internet. Deliberately and permanently harming an otherwise healthy child has no place in modern medicine.
And what exactly are we “curing” when we speak of “curing” autism? Autism, as it is currently defined, is a very broad spectrum. I have managed to complete school, hold down a career, and start a family of my own. There are thousands of others like me out there. Do we need to be “cured” because we don’t conform to a societal norm that itself is subject to change over time? Do we need to change because the rest of the world may be “uncomfortable” around us? In my own lifetime the same language has been (and still is) used with regard to the LGBT community. Increasingly science is discovering that gender identity is far more than the hardware we are born with. Gay and trans men and women have been subjected to aversion therapies that would constitute a violation of the Geneva Conventions if applied to prisoners of war. Thankfully this doesn’t happen as often as it used to, but even once is too much.
Likewise, those of us with autism are sometimes subjected to similar treatments to treat things such as repetitive motion or stimming activities. These activities, except where they pose a threat to a child’s health or safety, are only objectionable because society has made them objectionable.
And the treatment is not just formal clinical treatment. Elements of society administer “treatments” of their own in the form of bullying, ostracism, and discrimination in employment and education. Some well-meaning parents engage in mild forms of bullying in order to break their children of these behaviors and make them “normal” — “It’s for their own good!” Other parents, either through frustration or something much darker, take this behavior far beyond any acceptable level and children are often injured or killed as a result.
Some peer groups of children and adults single out the people who don’t quite fit in. This is usually a lose-lose proposition for those on the spectrum. One can attempt to conform and never quite get it right, and get admitted to a peer circle only to become the permanent butt of jokes. Or one can avoid conformity and become a complete outcast. Some people willingly choose the outcast role. From what I’ve seen of the way people in general act, it’s hard to argue against the decision.
It often seems everyone in society wants to be the top dog. And everyone has something he or she is willing to compromise in order to do so. Not everyone commits genocide or loots an investment fund worth billions. But how many people ignore the one person in the office who doesn’t participate in gossip or fantasy football? How often is that person passed over for promotion because he’s “not a team player” — even though the team benefits from his or her efforts? How many people don’t get invited to parties because “they just don’t fit in?” How many people are turned down for dates because “they’re just not my type?” How many of those who say such things can possibly articulate what they really mean? And this is why people on the autism spectrum are so often excluded as a daily part of life.
I have experienced this sort of behavior my entire life. And although I have managed to gain a family and a circle of friends whom I trust, I still sometimes experience it. You might say, “Yes, but everybody feels that way at one time or another — get over it!” To that I say, that may very well be true, but how would you feel if you experienced it and never understood why? When all your considerable efforts to understand are met with mockery, or sarcasm you just can’t see through, or even really bad advice designed to ostracize you further? When it’s your parents, or other family members, or your teachers, or your boss or even the leader of your faith community doing it to you? When ultimately you come to a position where you cannot trust anyone?
When I was a kid I remember my parents looking to a lot of different experts for help. Again, they were doing what good parents should do. Thankfully they had enough sense not to act on some of the things they were told. There were, especially in the early days, also some teachers who took it upon themselves to engage in their own “diagnosis” and “cure.” I remember being told in first grade to sit under my desk while being mocked by two teachers for the way I spoke. I am still very sensitive about the way I speak today. I remember receiving a beating from my school principal in second grade, solely for questioning something a teacher said — something not sanctioned by my parents or local laws, which required parental consent and notification even then. In third grade I was stood up and mocked in front of class by my teacher. The worst of all, though, was one I brought on myself.
Like most autistics, change is difficult for me. The change from high school to college was one of the most difficult. I was for the first time in an environment where there were a lot more people like me, but counterbalanced with a lot more people who were socially aggressive… much more aggressive than I was used to. The one place of comparative solace I had was in the church I attended at the time. They were a very charismatic, fundamentalist outfit. Since we autistics like structure and rules, I believe fundamentalism can be particularly dangerous for us if not practiced appropriately. Finding a place where (I thought) I fit in, I felt happy for the first time in months. Until the social game cropped up again. Even within such groups there is a social hierarchy — who’s dating whom, who does what, and whose opinion matters more. I started questioning it, but I wasn’t strong enough yet to do the smart thing and leave entirely. That came many years later; as you might surmise I still believe in God and consider myself a follower of Christ, but I have a great deal more skepticism about what goes on in church.
I was having, and still have to this day, a very pronounced tic where my shoulders will suddenly spasm, particularly if I am under stress. The emotional difficulties I was experiencing, combined with the tic, led the leaders of this group to come to the only “logical” conclusion they had available: I was demon-possessed!
For 30 minutes I was surrounded — voluntarily on my part, as I was desperate — by people who prayed over me in tongues, trying to remove the “demon” from me. I did not know then that their doctrine was as flawed as their understanding of the problem. They got louder, and more persistent, until finally I was triggered into a full meltdown, which they took as a sign of success.
For a while, I did too… but the problems still existed. The tic was still there. And so was my lack of comprehension of the rules of the new game I found myself immersed in. It took me many years and a lot of heartache to finally understand. I believe I am God’s own handiwork, and no one can break that down!
Of course that was an extreme case, and I’ve never had it quite as bad since then. But even today I still find well-meaning individuals who pray that I would be “delivered” from the “spirit” of autism. Who insist that a tendency towards introversion is really selfishness (far from it — I will bend over backwards to be of help). Who appreciate my help, but would rather me not be seen in public because “we have an image we’re trying to project.”
Now you know why acceptance, rather than awareness, is key for those of us on the spectrum. Autistics are outnumbered at best about 60 to 1. There is no way such a small minority of the human race can possibly impose its desires upon the rest. All we can do is highlight who we are, and how we can contribute positively. And that is what I try to do every day now that I’ve come to complete acceptance of my identity.
Going back a little bit: there are those who will cite cases of individuals who are very deep into the spectrum and have high needs for care and support. A compassionate society will do everything it can to help my brothers and sisters on the spectrum and their caregivers. Why should caregivers, usually parents, have to go it alone? Why not build a more robust social safety net to help everyone, whether they are on the spectrum or not? If we regard ourselves as an ethical society, or at least acknowledge that this is the end goal, why is this even a debate?
When you talk about “curing” autism you talk about removing something that makes me “me” at a very fundamental level. And when you talk about chopping out huge parts of someone’s psyche you damned well better be prepared to discuss what you’re going to replace it with. Do we even know what the “cure” would look like beyond social conformity? And more to the point: where do we, as autistics, have any say in the matter? Do not speak of us as though we aren’t in the room!
If all of the genetic markers of autism were identified, would it be an ethical solution to abort any fetus that showed signs of these markers, and sterilize the individuals whose gametes carry those genes? That would certainly “cure” autism for as long as we care to continue to do so.The objective would be met, at comparatively little expense. In order to be truly effective, however, the screening and the procedure would have to be mandatory, or else those inconvenient genes will still be around to propagate. But what are we losing in the process? Is it worth the sacrifice not just to society, but to our souls?
Do we want to sacrifice a creative spark that has fueled hundreds of generations of humanity’s creative genius? Suppose autism is really the gentle shove that pushes our society to new levels of achievement… but in return we are confronted with the care of a few individuals who need extra assistance, and the need to treat people decently regardless of how much they don’t “fit in?” Suppose the man or woman 17,000 years ago painting bulls on the roof of a cave in France didn’t “fit in?” Apparently that long-ago hunter-gatherer band found a way to accept that person, because he or she lived long enough to create our oldest works of art and inspire the rest of the tribe. What if in “curing” autism, we ensure ourselves no more Parthenons? No more Mona Lisas? No more Illiads or Odysseys? No more penicillin or moon landings or iPhones? Suppose in trying to solve a “problem” on Earth we deny ourselves the stars? Because settling for things to be within an acceptable norm is by definition settling for mediocrity! We are human beings; I believe every one of us is made in God’s image, and that image should not be defiled.
And if along the way we find ourselves having to become a more compassionate society, taking care of those who cannot help themselves, is that such a bad outcome?
Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.
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Getty image by Choreograph.